Halfway point & Hair falling out

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Marc Bissonnette - 18 Apr 2008 00:41 GMT

Hey All;

Well, today was the halfway point of the radiation for a malignant
paraganglioma in the jugular bulb of the right side of my head, post-
surgery and originally diagnosed as glomus jugulare. (That long winded bit
is for future google searches :) )

I find that my scalp feels like I've got a constant sunburn, though it's
not unmanageable, though the therapists reminded me of the importance of
wearing a hat always outside, which I started to do today.

The lining of my nose seems to have broken down; It's constantly bleeding
lightly; Not enough to run down my face, but enough that there is constant
bloody mucous. They say to sleep with a humidifier in the bedroom.

Discovered today that there is a band of hair in the lower-right quadrant
in the rear of my head where the hair is falling out. I was always curious
how that happened with cancer patients and now I know: It literally just
pulls out in tufts; No pain or anything like that: Just pulls out. I'm
going to ask a hairdresser friend of my wife's if she can buzz my scalp
with a light touch this weekend, otherwise it'll look even more ridiculous
than normal (receding hairline to boot :) )

Overall, I'm pleased it's halfway; Energy levels are down overall, though
I've taken to long naps in the afternoon, up for a few hours, then sleep
for the night to get up for the 1.5 hour drive for radiation in the
morning.

Cleaned out the car this afternoon, which made my wife really happy. She's
been darned amazing throughout this, given the extra burden it's placed on
her. This is most definitely the "for better or for worse, in sickness and
in health" part :)

One more day, then it's a two day weekend break from radiation - yay!

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Marc Bissonnette
Looking for a new ISP? http://www.canadianisp.com
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csm7532@hotmail.com - 18 Apr 2008 15:35 GMT

On Apr 17, 5:41 pm, Marc Bissonnette <dragnet\_@_/internalysis.com>
wrote:

> Hey All;
>
[quoted text clipped - 35 lines]
> Looking for a new ISP?http://www.canadianisp.com
> Largest ISP comparison site across Canada.

Here's something good to think about: I also had a lot of bloody
noses, though from chemo, not rad. I'd forgotten that until reading
of yours, which just shows how quickly the bad experiences fade into
dim memories. Or maybe that the drain bamage is persistent :)
Congrats on the half-way. I look forward to the "all done and all
clear" post, and later posts when side-effects fade. Just remember to
keep a positive outlook, and get that iv drip of onion juice, or
whatever the miracle cure of the day is (I like the Tommy idea, but
that's just me).
As for the hair loss, mine was light and even. My hairline receded a
little, and about half of my hair came out throughout my scalp and
elsewhere, no clumps, just thinning. Most people had no idea I was a
cancer patient. Part of that may have been because I have a buzz
cut. My theory is that the shorter hair may be less likely to pull
free, and certainly loss is not as noticeable. Hats can exacerbate
the problem, but may be necessary regardless. After the last
treatment, my hair slowly grew back---even the stuff I didn't want.
Good luck with your recovery, which should begin soon.

---
CSM

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The Bobert - 18 Apr 2008 22:10 GMT

> Discovered today that there is a band of hair in the lower-right quadrant
> in the rear of my head where the hair is falling out. I was always curious
[quoted text clipped - 3 lines]
> with a light touch this weekend, otherwise it'll look even more ridiculous
> than normal (receding hairline to boot :)

I can relate to that. When my hair started falling out I went to a Super Cuts
and had it buzzed. Then I washed it away in the shower. It took a couple of
weeks to fall out and a couple of years to grow back. When it came back, it was
as fine as baby hair. Before radiation the hair strands were thick. I've heard
from some that straight hair could grow back to be curley. I haven't heard of
color changes, but I'd bet there have been some.

After the Whole Brain Radiation I got a Norelco Electric Razor, and kept my head
as bald as a cue ball. My grandson was getting married in 3 months, so I kept
it shaved. A friend said I looked like Uncle Fester (from The Addams Family for
you youngsters). He was right!! I got out my rusty trusty PhotoShop and gave a
picture dark rings around my eyes. Looked just like Fester. A friend
photoshoped the family picture and sent it to me. Looks good.

You can see the result at:

http://www.pbase.com/the_bobert/inbox
Click on the thumbnails to see the larger picture

That was in 2004. I'm still here and as ornery as ever.

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*An accordion is harmless as long as people leave it alone.

Bob in Central California

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csm7532@hotmail.com - 18 Apr 2008 23:59 GMT

> In article <Xns9A83C854C34BAdragnetinternalys...@216.196.97.131>,
>
[quoted text clipped - 32 lines]
>
> Bob in Central California

Pretty funny. FWIW, I'm a young man, and I knew who Fester was---even
without the movies. A more charitable comment would be that you
looked like Telly Sevalis. In any case, better Fester than Itt.

---
CSM

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Marc Bissonnette - 19 Apr 2008 12:08 GMT

>> Discovered today that there is a band of hair in the lower-right
>> quadrant in the rear of my head where the hair is falling out. I was
[quoted text clipped - 27 lines]
>
> That was in 2004. I'm still here and as ornery as ever.

<BFG> That's a great picture :)

Heck, I'm 36, but I've been labeled ornery often :) (Heck, the other day,
I was labeled "draconian" by my friend, for my views on law & order :) )

I actually slept 14 hours yesterday ; Got home @ 5 PM, got up at 7 AM
this morning. Feel more rested than I have all week :) Went to some
family friends yesterday who had put my name in for a Victorian Cancer
Quilt - That was a really nice gesture and a beautiful quilt. Someone put
an envelope in our mailbox yesterday with a really nice poem and a
hundred dollar bill, but no name. Cancer can sure as heck show you how
nice people are around you.

Signature

Marc Bissonnette
Looking for a new ISP? http://www.canadianisp.com
Largest ISP comparison site across Canada.

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xela56 - 19 Apr 2008 22:58 GMT

> Heck, I'm 36, but I've been labeled ornery often :) (Heck, the other day,
> I was labeled "draconian" by my friend, for my views on law & order :) )
[quoted text clipped - 6 lines]
> hundred dollar bill, but no name. Cancer can sure as heck show you how
> nice people are around you.

That is great I am glad you are finding the support you need. Sounds like
you got good rest too

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J - 19 Apr 2008 00:01 GMT

> Hey All;
>
[quoted text clipped - 7 lines]
> wearing a hat always outside, which I started to do today.
> [...]

Good idea for everyone anyway - lower risks of skin cancers, later in life.

> One more day, then it's a two day weekend break from radiation - yay!

TGIF ! Have a great weekend, Marc.
J

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The Bobert - 19 Apr 2008 21:28 GMT

> Hey All;
>
[quoted text clipped - 6 lines]
> not unmanageable, though the therapists reminded me of the importance of
> wearing a hat always outside, which I started to do today.

Wait till it starts peeling and slufing off. Mega dandruff. If it gets painful,
use some Solarcaine spray. Neosporin + pain relief is also good if you don't
mind the gel base.

> The lining of my nose seems to have broken down; It's constantly bleeding
> lightly; Not enough to run down my face, but enough that there is constant
> bloody mucous. They say to sleep with a humidifier in the bedroom.

Wait till it starts growing back in. Mine came back in patches. The first was
where my pony tail was. I had dreams of staying bald except for my ponytail,
but it was not meant to be.

> Overall, I'm pleased it's halfway; Energy levels are down overall, though
> I've taken to long naps in the afternoon, up for a few hours, then sleep
> for the night to get up for the 1.5 hour drive for radiation in the
> morning.

If possible, you may try to find someone to help with your driving, or just keep
you company on the long rides. From my experience, the fatigue will only get
stronger, and will persist even after your radiation is complete.

> Cleaned out the car this afternoon, which made my wife really happy. She's
> been darned amazing throughout this, given the extra burden it's placed on
> her. This is most definitely the "for better or for worse, in sickness and
> in health" part :)

Amen to that. Barbara was my anchor, rock, nurse, and strength during my
ordeal.

> One more day, then it's a two day weekend break from radiation - yay!

and double Yay.

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*An accordion is harmless as long as people leave it alone.

Bob in Central California

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